grant
HomeVENT (Home Values and Experiences Navigation Track)
Organization JOHNS HOPKINS UNIVERSITYLocation BALTIMORE, UNITED STATESPosted 4 Sept 2023Deadline 31 Aug 2028
NIHUS FederalResearch GrantFY20250-11 years oldAddressAffectCardiacCaringChildChild YouthChildhoodChildren (0-21)ChronicClinicalCollaborationsComplexConflictConflict (Psychology)CounselingDataDecision MakingDevelopmentDialysisDialysis procedureEligibilityEligibility DeterminationEnrollmentEnteral FeedingEspanolEthicsEvaluationFaceFamilyFamily ProcessGeneralized GrowthGeneticGeographyGoalsGrowthHealth systemHomeHospital AdmissionHospitalizationIndividualInstitutionInterventionLifeLife ExpectancyLife ExperienceLightLungLung Respiratory SystemMedicalMedical TechnologyOutcomeParentsPerceptionPhotoradiationPreparednessProcessProgram EvaluationProtocol ScreeningPsyche structureQOLQuality of lifeReadinessRecurrenceRecurrentRegretsResearchRespiratory InsufficiencyRiskSocial isolationSourceSpanishStructureSyndromeTechnologyTissue GrowthTracheostomyTracheostomy procedureWorkcare as usualcare resourceschild health caredesigndesigningdevelopmentaldialysis therapyend of life careenrollenteric feedingethicalexpectationexperiencefacesfacialfamily structurefeeding tubegastric feedinghealth care resourceshomeshousing instabilityimprovedinstably housedkidslack of stable housingmentalmortalitymultidisciplinarynovelontogenyparentpediatricpediatric carepediatric health careprematureprematurityprimary outcomerecruitrespiratorysecondary outcomeshared decision makingtooltreatment as usualtube feedingunstable housingunstably housedusual careventilationweb toolweb-based toolyoungster
Description preview
The number of children with medical complexity is increasing as medical advances reduce mortality from serious illnesses like prematurity, cardiac anomalies, and genetic syndromes. Some of these children have respiratory insufficiency and their families face decisions about tracheostomy and home ventilation. These children utilize the most…
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